Medical approaches to non-diabetic extreme hunger / polyphagia
August 29, 2022 10:23 PM   Subscribe

Ever since I was young, I've experienced continual, fairly extreme hunger, and have had difficulties controlling my weight because of it. I'm hungry right now! I have been successful in losing and maintaining weight, but my life is a continual, depressing, distracting struggle against deep and serious hunger. I've had frequent interactions with both PCPs and bariatric physicians since I was young and have had many, many tests done over the years, but those tests have never indicated that I am diabetic, have a thyroid disorder, nor, despite being obese much of my life, any problematic metabolic issues detectable by standard testing. I'm not looking for weight loss solutions - I can lose and maintain weight - I'm wondering if there's another route of testing I can take that might reveal the source of the hunger.

I should clarify that I'm not a binge eater. I don't eat when my hunger levels are low (although I'm almost never not hungry) and while I may sometimes overeat to get to a level of basic fullness - especially when hunger is inconvenient, like when on trips - I don't eat beyond that, certainly not to any discomfort or sickness or obvious extreme, and not with the stereotypically unhealthy foods. If we had dinner together, you'd notice I was a "hearty eater" but nothing more than that.

I have tried many different macronutrient ratios over the decades. Ketogenic diets consistently provide the least level of hunger, but result in fairly extreme issues of dehydration with leg and stomach cramping, even at lower levels of ketosis and with electrolyte supplementation. High glycemic index foods obviously have the worst effect on hunger. I've standardized on a high-protein, medium complex carb, lower fat diet with an emphasis on whole foods as being the most effective diet for controlling hunger, but the improvement is minor. I know roughly my caloric maintenance level from tracking my weight, and if I eat in a way where I will be maintaining my weight with any meal plan, I will experience substantial hunger throughout the majority of the day.

I have tried intermittent fasting and "many small meals". They do not result in reduced hunger. I have historically had the least amount of trouble with both my weight and hunger by eating breakfast, lunch, a small afternoon snack and dinner - bigger meals spaced out over the day have the most positive impact on my hunger levels.

I engage in mild exercise, but heavy exercise also increases hunger. I have a surprisingly high level of lean body mass for my weight, and both cardio and strength gains have positive benefits on my weight - but exacerbate the hunger. I fluctuate between getting my weight and fitness under control, and then giving into the hunger due to exhaustion and exasperation. Despite decades working on this, I have never been able to find a middle ground.

Because I can still eat what is considered a normal number of calories to maintain my weight, I do not believe that my metabolic rate is abnormal or has been affected by "yo yo dieting", believe it or not. This has been a problem for many decades - I was "off the chart" in terms of height and weight as a young child, and have apparently had an excessive appetite from before I can remember. The hunger has been present even during the rare periods I was at a conventional BMI. At this point in my life, I am absolutely confident my experience of hunger is far greater than most others face.

Stimulant-based appetite suppressants have worked to alleviate my hunger, and I can lose weight fairly easily when taking them, but they aren't a long term solution due to side effects and tolerance. Non-stimulant weight loss medications have not worked, including semaglutide.

Because of the high correlation of hunger with hyper or hypoglycemia in the medical literature, and despite my blood sugar and A1C always being normal in blood tests, I recently purchased a blood glucose meter and tested when fasting, post-meal and at times of the highest levels of hunger. While I occasionally test at slightly elevated ("pre-diabetic") levels I never test at levels of clinical hypo or hyperglycemia. Blood glucose is always normal or just slightly elevated.

I've seen physicians certified by the Obesity Medication Foundation, and I have not met a physician who has wanted to explore the issues of hunger beyond metabolic panels, blood sugar testing and thyroid tests. Despite my obesity, both myself and many physicians have been skeptical of bariatric surgery given my maintenance of a substantial weight loss from my top weight for many years - there does not seem to be any certainty it would alleviate the kind of hunger that I experience, and I haven't needed it to get my weight back down once it creeps up.

I'm so tired of being hungry. I've been dealing with this for 50 years, and I feel like I've literally exhausted all avenues of diet, exercise and medication, despite some success keeping my literal weight (but not the hunger) under control. What kinds of uncommon things could I reasonably convince a doctor to test me for that might provide an treatable answer?
posted by anonymous to Health & Fitness (28 answers total) 9 users marked this as a favorite
 
Don't suppose you can get approved for an MRI to pinpoint HOW exactly are you feeling hunger, which part of brain it's triggering, and how it compares to a normal person? Maybe you can help some sort of research project to pinpoint why you feel hungry, but that would almost surely need some sort of a university hospital or such research space.
posted by kschang at 11:03 PM on August 29, 2022 [1 favorite]


This is a little random, but how is your sleep? I’ve read about how chronic sleep deprivation can mess with the hunger/satiety hormones, ghrelin and leptin. I just got a CPAP machine last week, so sleep is on my mind. I don’t typically snore and I thought my sleepiness levels were normal until I talked about it with my PCP a few years ago. I know I’m much hungrier if I’m pulling an all-nighter in the short term, but perhaps you’re dealing with long-term effects.

(I assume the doctors have also screened for Prader-Willi syndrome, which seems pretty rare but Google keeps suggesting it when I’m trying to look up hunger hormone things.)
posted by loulou718 at 11:23 PM on August 29, 2022 [7 favorites]


Hello there! Nicotine is an appetite suppressant. I am not advising you start smoking, but the lowest level nicotine patch, the ones smokers use at the end of the four weeks or whatever it is might just give you a temporary stay of hunger. Ask you doctor/s about this and do not start with the big nicotine patch. I am not a doctor or any kind pro advisor and this is anecdotal.

I smoke cigarettes, and I get what I call "unhungry", where I know I haven't eaten for 12 hours and NOTHING appeals to me. I sometimes react to mealtime with disdain and procrastination. So we both have eating disorders, and I'd love to trade. But it does not work that way.
posted by vrakatar at 12:30 AM on August 30, 2022 [4 favorites]


Have you ever seen an endocrinologist? It may be hormonal
posted by kinddieserzeit at 1:21 AM on August 30, 2022 [4 favorites]


In the spirit of brainstorming, sometimes I misinterpreted mild heartburn as hunger when I was pregnant.
posted by freethefeet at 1:46 AM on August 30, 2022 [4 favorites]


Testing is a complicated wish for subjective measures like hunger. I say this as someone who has an undiagnosed gastrointestinal/immunological issue until age 11. I had been borderline anorexic due to inescapable nausea, and the diagnosis (and treatment) sent me in the opposite direction. I became ravenously hungry. After a decade as a near skeleton, I couldn't avoid hunger and I couldn't find satiety. I was in my mid-20s before I stepped back from looking for a purely physiological approach and sought other avenues to address the issue. To summarize, now that I'm in my 40s, I worked with an RD to eliminate some problematic foods that pretty reliably angered the immunological background noise (in my case, refined fats and oils and particularly fatty foods like most meats tipped me down into the "flare up" scenario that would make everything worse). That led me to a more or less vegetarian diet. Through personal trial and error, I eventually went fully vegan and holy moly that alleviated I'd say 90% of the issue. I was in my late 30s before I ever saw a therapist—for a completely unrelated issue, as documented in my ask history—and my therapist and I jointly noticed some conscious and unconscious details that seemed to make sense to address. I haven't fully gone through everything that's come out of this therapy journey, but my word has it helped. The "simple" notion of sitting with hunger, examining hunger, is so much more complex than I expected it could be, and I'm intrigued by what I've been learning. I gravitated toward ACT in particular, in case that approach to therapy is any help to you. From my vantage point, I have been a bit stunned to dive into how much I prioritize my feelings of hunger, taste, smell, texture, and so on as it relates to an early childhood that depended so much on saltines and room temperature tap water. It's no surprise, I guess, but the details of just where that psychological alignment embedded in my mind/outlook/daily experience/whatever we call it have been surprising to this grown-ass man.
posted by late afternoon dreaming hotel at 3:25 AM on August 30, 2022 [7 favorites]


In brainstorming mode: I’m fairly sure I’ve been interpreting anxiety as hunger for years.
posted by Iteki at 4:46 AM on August 30, 2022 [7 favorites]


This thread on the blue may be of interest to you The-Next-Blockbuster-Drugs-are-for-Weight-Loss. Certain types of drugs initially approved as Type II Diabetes treatment but have since also been approved to treat obesity can have a significant effect on feeling hungry/feeling full.
posted by koahiatamadl at 4:58 AM on August 30, 2022 [2 favorites]


If you wanted to get a more in-depth look at what your blood glucose is doing throughout the day in hopes of identifying a pattern, you could look into getting a continuous glucose monitor (CGM). It's a small sensor you attach to your body (upper arm or abdomen usually, depending on the device.) It monitors your glucose continuously, and all you have to do is swipe a reading device over it once every 8 hours. You can swipe more often if you want to see an instant reading of what your blood sugar is doing, but swiping every 8 hours will ensure your device captures all the data in each 24 hour period.

I have the Freestyle Libre2. I plug my reader device into the computer periodically to download the data, and there is a computer program that will show me reports and graphs of what my glucose has been doing. The graphs in particular will show spikes or drops throughout the day so you will be able to see if, for example, you had a big rise right after lunch, or if you stayed stable, or maybe you had a rise or drop at an unexpected time. For example, it is expected that your sugar will rise a certain amount within x amount of time after lunch, and gradually come back down. But for someone who has a disorder such as delayed stomach emptying, they may not get a rise until much later after a meal and so sometimes tests will miss it. Just as an example of how continuous monitoring can help show patterns that would otherwise not come to light if you are only testing at certain times.
posted by Serene Empress Dork at 5:17 AM on August 30, 2022 [2 favorites]


I'm so tired of being hungry. I've been dealing with this for 50 years, and I feel like I've literally exhausted all avenues of diet, exercise and medication, despite some success keeping my literal weight (but not the hunger) under control. What kinds of uncommon things could I reasonably convince a doctor to test me for that might provide an treatable answer?

I am in very much the same boat. I no longer believe there exists an answer that's treatable by any measure short of full acceptance that this is just how my particular body operates, and that the problems I experience as a result are due to a mismatch between how my body works and the environment in which I find myself.

If I were living in circumstances that required way more work to obtain a meal than I need to do at present, the amount that my body demands that I eat whenever I do have access to food would not be causing me anything like the trouble that it consistently has for as long as I've been alive. In fact I can easily imagine living circumstances in which the way my appetite works would be positively advantageous.

But the thing is that I really like living where and how I do. I don't really want to re-jig my entire life to force myself into the kinds of restrictions that would undoubtedly be involved in making the appetite issue adaptive instead of dysfunctional.

And what that means is that my apparently dysregulated appetite is not a problem to be solved any more. Sure, it's not the slightest bit adapted to where and how I live but that's just part of the way things are, something that I need to accept and take account of and work around, and that has to be enough. It's never going to get "fixed" because it isn't broken; it just is.

Given the number of people in my community who clearly have nothing like the degree of difficulty with appetite regulation that I have lived with all my life, this could easily be interpreted as massively unfair. I've still not quite got past resenting that, but it's getting there. It really helps to remind myself that lots of people have to put up with loads worse lifelong shit than I've ever had to.
posted by flabdablet at 5:37 AM on August 30, 2022 [10 favorites]


I'm 60 years old, by the way.
posted by flabdablet at 5:48 AM on August 30, 2022


Came here to post about GLP-1 agonist research, which powers the new class of drugs mentioned by koahiatamadl above.

The gist is that at least some people with obesity are found to have a deficit of (or issues with) a hormone that signals to the brain that the stomach is full. i.e., It helps control overeating, even if not binge eating. This new class of GLP-1 agonist drugs make the brain think the stomach is full. The drugs were developed for diabetes, but because this appetite suppression is a feature, they were also labeled under their own separate names for weight loss only.
posted by ImproviseOrDie at 6:39 AM on August 30, 2022


“Stimulant-based appetite suppressants have worked to alleviate my hunger, and I can lose weight fairly easily when taking them, but they aren't a long term solution due to side effects and tolerance. Non-stimulant weight loss medications have not worked, including semaglutide.

Looks like the OP is aware of and has tried the drugs.
posted by Bottlecap at 6:43 AM on August 30, 2022 [6 favorites]


Your description is extremely similar to my experience and I'm sorry that you've been going through this for so long. Fasting/VLC works well enough for me most of the time so I haven't gone very far down this route myself, but have you done any testing with a gastro specialist for digestive disorders or gut microbiome issues? In some cases, IBD, Crohn's, and similar conditions can present with atypical symptoms and persistent hunger.
posted by notquitemaryann at 6:54 AM on August 30, 2022


Genetic testing for mutations in genes involving satiety (MC4R, FTO, LEPR, and DRD2).
posted by Iris Gambol at 7:48 AM on August 30, 2022 [2 favorites]


This seems like it might be something that Mayo's Executive Health Program might be able to answer. I have no personal experience with it, but it seems like it is very much a whole body all systems everything exam and program. In my understanding, it is a program designed to answer these tough questions, and the doctors are interested in the "nobody else can solve this" scenarios.
posted by Ms Vegetable at 7:48 AM on August 30, 2022 [2 favorites]


This is totally brainstorming stuff, but i've been a bit chunky and hungry all my life but not in a really disturbing way, but I manage to maintain a moderate weight with exercise and essentially eating two meals a day plus snax/dessert. I don't eat a big dinner because it makes me feel gross and also kicks up my gerd. Anyway that was background.

A few months ago I, a person who generates testosterone but no estrogen, added a very small amount of estradiol in the form of skin patches, mostly as a lark (for my own reasons). What I noticed was that I became much hungrier, almost distractingly so, wandering out into the kitchen every hour or two just looking for something to graze on. My health journal records state several times that I felt I was eating too much. I gained some weight like this, and found it annoying and hard to work against.

A few weeks ago I stopped with the patches, and after a week or so, the really exceptional hunger went away, and now I'm working on slowly losing what I gained.

Which is a long way of saying -- have you had your hormone levels checked?
posted by seanmpuckett at 8:53 AM on August 30, 2022 [1 favorite]


Thirst can be mistaken for hunger but I'll bet you know that.

Try extra fiber for a few weeks. Psyllium husk capsules are easy. Even mild constipation can trigger hunger because eating prompts pooping. I take fiber and am less hungry when I take fiber every day.

Aside for any other readers: Even mild constipation can cause urinary incontinence in children and adults. Taking daily fiber is easier than meds to control incontinence, and has other health benefits. It's great to be able to sleep through the night.
posted by theora55 at 8:59 AM on August 30, 2022


Consider being tested for Prader-Willi syndrome?
posted by panhopticon at 11:25 AM on August 30, 2022


I knew someone who misinterpreted reactions to their extra-strong stomach acids for "hunger pains". Taking an acid controller such as famotidine (over the counter) seemed to help them. I don't know, because I am not a medical professional, if there are tests for such things.
posted by TimHare at 11:58 AM on August 30, 2022


My husband, who has diabetes, has found Glucose Revolution incredibly helpful. Changing the order we eat and some of her other suggestions has helped both of us feel less sluggish. You can check her instagram to kind of try before you buy.
posted by bwonder2 at 12:10 PM on August 30, 2022


I sometimes interpret low blood pressure as hunger.
posted by metasarah at 3:02 PM on August 30, 2022


Thirst might be the answer. I noticed that when I really want sweets, I get a drink of water. Almost all our dietary stuff is water based. And if you are dehydrated it messes with the insulin receptor sites everything shrinks with dehydration. Take in less salt, until your water balance is right. When you get hungry between meals, drink 12 oz of water. Eat appropriately at regular intervals, take water in between.
posted by Oyéah at 4:12 PM on August 30, 2022 [1 favorite]


Thanks for giving me the opportunity to research something!

Before I get into anything new here I'd first like to say that your plight is well-stated and I infer that you've given it a lot of thought. I'd like to endorse several answers here as helpful things to try in my experience trying to help people lose weight - different macros, getting water first when hungry, psyllium or other bulking foods, interpreting anxiety or low blood pressure as hunger. However, I'm going to assume that you've tried these and see if I can find a different angle of attack.

Semaglutide seems to help a lot of people with weight and they seem to feel like it helps them to set a satiety level to control their eating. Some have said they just think less about food when they have the right dose. It's interesting that this doesn't affect your hunger. I have less vicarious experience with stimulants, having reached a similar conclusion about benefits versus risks. It strikes me, though, that the GLP-1 signal (semaglutide) and stimulant effects on appetite are likely very different. Looking this up, it turns out we don't even know for certain why amphetamine decreases appetite. There's lots of information (from the 1980s) about the effects of amphetamine in different areas of the brain, sometimes combined with things that block the dopamine or norepinephrine release or receptors in the area. These studies appear to show several potential areas of the brain where dopamine or norepinephrine may cause appetite suppression, but they each seem to find a different area and no recent paper (in my search) commits to a mechanism. This, then, doesn't particularly help you with the question of why you always hunger.

Tackling the measurement of hunger, this paper addresses some difficulties in the situation. Researchers can ask questions about perceived fullness, hunger and willingness to eat more and combine them in a formula, or they can run tests on hormones (CCK, ghrelin, PYY and GLP-1) that change their levels rapidly in the body, degrade quickly when drawn in the blood and may not be really measuring hunger or satiety. I've never seen any obesity specialist run any labs like these.

This paper from last year reports on an attempt to define normal values for several gut hormones. They discuss how they prepared people for testing by standardizing the meal the night before testing, having them come in fasting, and then testing with two different standard meals to arrive at normal ranges for the tests. This is the best indication I've seen that someone might be doing lab testing that could give you further information. They're located in Cambridge, UK. If you live close enough to them you could perhaps contact them and try volunteering yourself as a potentially interesting person to test and see how your hormone levels compare to their healthy normal range. Or, perhaps they might have colleagues that are nearer to your home.

One last thought. You mentioned non-stimulant weight loss medications including semaglutide. Offhand, I can think of a few others with different (or unknown) mechanisms of action and I'm wondering if you've tried metformin (unknown), topiramate (unknown) and bupropion/naltrexone (proopiomelanocortin) as possibilities. Or the (currently unavailable in USA) sibutramine (multiple possible mechanisms related to serotonin/norepinephrine/dopamine) or lorcaserin (proopiomelanocortin) It would be interesting to see if your perception of hunger was affected by any of these. Perhaps this might help you narrow down a mechanism for your hunger.

Best of luck and of course, fortune favors the prepared mind!
posted by Emmy Noether at 7:09 PM on August 30, 2022


"Non-stimulant weight loss medications have not worked, including semaglutide.”

My bad for obviously not reading closely. Sorry, OP. For future askers of similar questions, semaglutide is not the only GLP-1 drug.
posted by ImproviseOrDie at 4:45 AM on August 31, 2022


More brainstorming: I had semi-constant hunger for a couple years until I started taking vitamin D, at which point I went back to my normal. I tend to be low in vitamin D.
posted by Comet Bug at 10:44 AM on August 31, 2022


I was going to suggest GLP-1 agonists (e.g. semaglutide), but I see you've tried those and they did not help. (They're the only things that have ever significantly helped with my excessive hunger.)

The only other thing I have to add is that Novo Nordisk has three other non-GLP-1 agonist compounds in their obesity research pipeline, which you might want to keep an eye on as they proceed through clinical trials.
posted by Juffo-Wup at 3:49 PM on August 31, 2022


(I understand that you aren't necessarily obese and that weight is not your primary concern, but I believe that the suspected method-of-action of all three investigational compounds is appetite suppression, which I imagine would be of interest to you.)
posted by Juffo-Wup at 3:53 PM on August 31, 2022


« Older Being human with cancer   |   Air fryers/nonstick and oil sprays Newer »
This thread is closed to new comments.